All posts filed under: Living with EDS

Post-Wellapalooza 2017 Annihilation

Definition – “annihilation [uh-nahy-uh-ley-shuh n] noun an act or instance of annihilating, or of completely destroying or defeating someone or something: the brutal annihilation of millions of people.  the state of being annihilated; total destruction; extinction:  fear of nuclear annihilation.” – http://www.dictionary.com/browse/annihilation  The feeling of post-Wellapalooza 2017 annihilation called for a lot of sleep and self-care at Shakthi Health & Wellness Center. And my headache is gone!  Love this place!

Living with MCAS – “It’s nice to meet you too.” 

Saw a new MCAS doc today. Other than my main docs, I do not have a local doc who understands MCAS and issues associated with sensitivities to meds, etc. I’m not one to doctor shop and don’t have time to anyway, so I’ve just dealt on my own – barely. However, things have gotten worse, especially associated with hormones. Two times a month, my body decides it really wants to party hard (more than usual) by attacking itself and anything I eat or take. Fun times. My husband came with me and after we discussed the main gist of why I was there with my new doc, I asked her about allergy testing. I wanted to ask her for two reasons: 1. I’ve never had it and am somewhat curious. 2. Her response would give a good indication of her knowledge and understanding of MCAS overall – particularly for my case. Of course, I could be “allergic” to something more traditional and that would make things a lot easier – right? My new doc’s response …

Living with EDS and MCAS

When you are the founder of a 501(c)(3) nonprofit and your focus is on serving those with Ehlers-Danlos syndromes, Hypermobility Spectrum Disorders, and related conditions, this is how you roll to a new doc apt. And again tomorrow too … I just want the hot spots on my thighs, the millions of pins and needles that are all over that are pricking me, and the cold breeze blowing on me, to stop. Otherwise, I may lose my mind. #RealLife #AllClearDermCheck #LivingWithEDS #MCAS #EhlersDanlos #NewLocalMCASDoc #PrayingSheCanHelpTheseReactions #AlreadyWarnedAfrin #LivingWithTheTrifectaIsARollerCoaster

You know that you have mast cell issues when … 

You react to something in an “organic” Cliff Bar – or, it’s probably the “natural flavors.” The reaction started as soon as I started taking bites and then just got worse. And that was this morning. It has not let up. I’ve taken cromolyn sodium and have tried to avoid needing something else, but I can’t get it under control. I feel terrible – sick to my stomach and like I have hot spots all over my body with a million needles pricking me. I also feel cold and chilled – like a cold draft is constantly blowing on me. My bladder is also been on fire. That was one of the first really bothersome signs that I was having a bigger reaction – bladder pain woke me up and I felt like it was burning inside of me. This is when I hate Interstitial Cystitis (IC) with a passion. My body is clearly flared and angry because I also got an ocular migraine for the first time in 5 years. Resources:  – What is MCAS? …

My #Just5Minutes Parting Gift

While walking on the treadmill last night, I felt the top of my hand get tighter and tighter. I also felt a hot stinging-like pain. I finally stopped walking (I wasn’t walking super fast either), tried to open and close my hand, but it hurt a lot more than I was expecting. I hadn’t actually looked at my hand until that moment, and I suddenly realized why it hurt more than usual – I had a small vein rupture, sometimes referred to as a hematoma. It was more swollen than other small ruptures I’ve had before. I iced it, and the pain slowly subsided, but I can’t say it looked much better afterward.   For the record, my “just 5 minutes” was way more than just 5 minutes, despite my annoying issue. My at home workout today: – 30 mins on indoor spinning bike – 30 mins walk on treadmill (3.0-3.3mph) – 25 mins PIYO Buns workout – 30 mins PT/Strength exercises Pics of my hand that will take forever to heal now: Reference for …

#Just5Minutes – 20 mins cycling at home and the other side of needing meds to help you focus 

Sometimes you just aren’t feeling like it. Other times there’s so much going on that you have to choose sleep or to exercise. Most of this week, I opted to get sleep because how much it affects my brain cognition, my ability to drive and to get through a day of non-stop appointments, meetings, conference calls, and life. It was also my birthday this week, and I usually love to book my favorite classes back to back, just because I can, but that didn’t happen this week. It didn’t happen on my birthday either. I have been feeling very run down this week, and more than frustrated because of how I felt. I didn’t understand it. It didn’t make sense to me. I was getting sleep but felt like a train wreck when I woke up. Part of me couldn’t believe or accept that the way I was feeling was because I crammed hard for the C.H.E.S. exam last Saturday. It had been several days since I sat for the exam and it didn’t make …

Autonomic testing before my business meeting at 3pm

Days like today are why I’m grateful that the life I live and the work I do overlap. Gratitude.  Link to the autonaumic nervous system test (Ansar Testing) that I had done – http://www.tlcdiagnostics.com/patients/tests-and-procedures/ansar-testing What is autonomic dysregulation? http://www.mitoaction.org/guide/autonomic-dysregulation You can also visit www.dysautonomiainternational.org to learn more. 

Small Vein Rupture and Colder Weather = Blue Hands

When it gets colder, and your hands go from red and swollen to blue and shriveled (AKA – aged appearance of the hands more commonly associated with Vascular Ehlers-Danlos, but can also be a seen with other types of EDS/Hypermobility Syndromes). Oh and you also notice a small vein rupture that apparently happened either last night or sometime this morning. The featured picture is of my left hand, but small vein rupture is on my right hand.

Life by Design – Gratitude for doing what I love 

I started my first business 10+ years ago after I had baby #1 after I was diagnosed with EDS. This business was also started after being on long-term disability from my “career” job, one that I loved, and after facing the decision to accept or decline permanent social security disability at age 27yo. I declined it. My choice — being disabled at 27yo didn’t feel right for me, and working, doing something, helps me manage my health and well-being. I also needed to help support my family, be available for my son (only one baby at the time), and have flexibility around my husband’s job. I figured I could find something that I could do on my own, and I did. Five years ago, I started a 2nd business to serve the community that I was now a part of — both as a patient and volunteer. I wanted to use my degree to help disseminate education and work with people on how they could best help themselves, if they didn’t have a physician or PT …